Canadians saw the worst-case scenario of a disjointed health care system in 2012, when Greg Price died after a series of missed communications. One of the key problems was a missed test result. After a doctor at a walk-in clinic found a mass in his abdomen that he worried could be cancer, he ordered an urgent CT scan.
Three weeks later, that scan was performed — during which time the doctor Greg had seen had left the walk-in clinic. Because of that, the office never called Greg with his CT scan results. It was only after he called the clinic himself that another physician reviewed the test with him, and referred him to a urologist.
“Greg tried to do what he could, but you’re really swimming in the dark on a lot of it, because there’s so much outside the patient’s control and knowledge, to the point where you flounder,” says Dave Price, Greg’s father, who has worked to encourage change in the system since his son’s death. “Patients need to be full partners, able to be part of a decision making process, and fully knowledgeable along all of the steps.”
Greg’s death provoked a Continuity of Patient Care study from The Health Quality Council of Alberta that was released in late 2013, with 17 suggested changes to improve the system. A follow-up report released this summer found that only three of those suggestions have been fully implemented, and 11 are at a high risk of not being done. Among the unfulfilled recommendations is the implementation of electronic systems that would automatically notify pathologists when the doctor that ordered the test had seen the results.
Right now, doctors are often sent test results by fax or through the mail. “We learned from our interviews in this review that radiologists spend a lot of their time trying to track down physicians about critical test results, let alone non-critical test results,” says Eric Wasylenko, medical director of Health System Ethics & Policy for the HQCA. “If they couldn’t get the physician, then they would actually call the patient themselves, perhaps to refer them directly to the emergency department. We want there to be a mechanism that is far more reliable than the current one.”
Another recommendation from the HQCA was to create a personal health portal that would allow patients to see and add to their own health records, including lab results and diagnostic imaging reports. Nova Scotians already have access to this, with a province-wide patient portal for test results that has just been launched; in Ontario and BC, LifeLabs also offers its patients non-crucial results online.
Meanwhile, as part of its regular updates, the College of Physicians and Surgeons of Ontario is also reviewing its Test Management Policy with an eye to continuity of care. “There are some potential vulnerabilities or weaknesses in our system,” says Andrea Foti, manager of the policy department for the College of Physicians and Surgeons of Ontario. “Are there good linkages between specialists and primary care, are there good linkages and flags to follow up on urgent results? And what if an urgent result comes in after hours?”
There are more mismanaged test results more than you might think: An article from The Canadian Medical Protective Association looked at complaint case files from 2006 to 2010, and found that 76 cases were a result of mismanagement of tests and diagnostic imaging reports, mostly involving family physicians, and mostly for failure to properly follow up on tests. A systematic review looked at ambulatory patients in the US and found “significant safety issues” in missed test results. The studies it looked at showed there weren’t documented follow ups in many cases, ranging from 7% to 62% for lab tests, 1% to 11% for abnormal radiology, and 11% to 36% for mammograms.
It’s also telling that 25% of family doctors in Ontario reported they’d had to repeat a test (or procedure) in the past month because the results were unavailable. That number is even higher in some other provinces, rising up to 39% in Manitoba.
“Anytime we don’t get the right [test result] information in the right people’s hands in a timely way, it can become a critical problem,” says Wasylenko. “But it can be solved with the right systems in place.”
The patient side: New websites let patients see their own results
“No news is good news” is becoming a thing of the past, as test results management moves toward websites that allow people to see their own results. New web-based systems are allowing patients the ability to see their test results — sometimes even ahead of their doctor. In the US, the Mayo Clinic, Intermountain Healthcare, the department of Veterans Affairs and Kaiser Permanente all offer patient portals. In Canada, Lifelabs offers access to test results to 1.25 million patients in BC and Ontario. And Nova Scotia recently became the first province to introduce a province-wide system that allows patients to see their test results, called myHealthNS.
“The thinking is that an engaged patient is a healthier patient,” says Chris Faulkner, project manager of myHealthNS. “Literature indicates that patients who have access to their health information take a more active role in their health care.” Some portals in the US automatically also include general guidance on what an abnormal test result might mean.
Nova Scotia’s system allows physicians to control the release of the results, so that they can select some categories to never release automatically, such as HIV results. It also offers the option to put a delay on results so that the doctor can review them first. But myHealthNS recommends to physicians that they automatically release results, because it’s less work. “During our pilot, we had a couple of our physicians who automatically released all results, and they put in their standard message something along the lines of, ‘You may be receiving these results before I’ve had a chance to review them, but I will be reviewing them within the next X days, and if there are any concerns, our office will be in touch to book an appointment,” Faulkner explains.
That’s especially beneficial for patients with chronic conditions, who can use these results to get a sense of their condition over time, says Sue Paish, the CEO of Lifelabs. “What a patient sees is the range around normal — we call those reference ranges — and it shows them where they are on that range,” she explains, adding that they don’t delve into the meaning of abnormal results. “We appreciate that patients need reports that they can understand, but we are also very alert to the importance of the physician-patient relationship, and the physician gives medical advice or guidance. We do not go into that territory.”
Their portal also doesn’t include the results of some tests, including genetic screening and cancer tests. “You will never receive a result that is a serious or critical result by opening your email,” says Paish. “Those kind of results need to be delivered person to person, partially because of the impact of the result, but also because the physician often needs to take action.”
The pilot phase of Nova Scotia’s project, which included 6,000 patients, highlighted other benefits. It reduced waste in the system — Faulkner’s group found that over 60% of patients in the pilot would have called their family physician if they hadn’t had online access to get their test results, and many would book appointments as well, often just to find out that their test results were normal.
A patient portal might also help patients ensure their tests don’t get misplaced – but doctors also “need to try to be cautious that we’re not simply downloading responsibility onto patients,” says Foti. “We want to support patients’ decision making and autonomy, but our job as a regulatory college is to set expectations for doctors to take the positive action they need to take to ensure that care is provided.”
But “a personal health portal meets some really important principles: it finds a way to involve patients appropriately, and helps them manage their own care,” says Wasylenko. “It’s one more way to assure safety.”
The provider side: creating better systems for doctors
One of the key recommendations in the HQCA report was to work towards creating a provincial clinical information system (CIS), which would, among other things, tie together the electronic health record systems throughout the province. But the report suggests that kind of a system is more than 10 years away from implementation. It would allow for a critical test results management system that would flag the 10% of diagnostic imaging results that detect urgent issues and track when those results were reviewed by a physician — what’s known as a closed-loop system.
In that system, doctors would be alerted through an electronic medical record (EMR) system that might have a “critical test result inbox” or through an email to send an automatic receipt that it’s been read. (EMRs aren’t foolproof — doctors can open an alert and not act on the test results. One study found that 11% of critical imaging alerts through EMRs lacked the proper follow up.)
Another thing that isn’t standard — but should be, according to Wasylenko — is a continuously updated provider registry that would have up-to-date contact information for physicians, and offer a colleague to contact instead when a physician is away on vacation. This would also allow an EMR alert to be routed to another physician.
Gaps in test management can also be a problem within hospitals, says Janice Kwan, staff physician in general internal medicine at Mount Sinai Hospital and assistant professor of medicine at the University of Toronto who has written about this issue in the British Medical Journal. “Care transitions in particular are a very vulnerable period in a patient’s journey, where there are multiple handovers, from the emergency department to inpatient care team, or inpatient team to outpatient family physicians and specialists,” she says.
Within the hospital, the process isn’t standardized, she says. An emergency room physician who receives the results of a test they ordered might follow up with the admitting doctor who is now caring for the patient by email or by phone. “The practice is actually quite variable in terms of how individual physicians close the loop,” she says.
But discharge is typically a more formalized process. Hospitals try to encourage closed-loop communication through detailed discharge summaries that are supposed to be reviewed with patients. “Let’s say a critical test result has not been reported yet. We would say to the patient, we expect to receive it in a week’s time. We will contact you with the results, but if you do not hear from us in a week, please reach us at the following number,” she explains. Arranging follow-up appointments after the tests results are expected back is another way to close that loop.
Dave Price is not convinced we’re close to getting where we need to be around test results, or around continuity of care in general. “Whenever we do a public presentation [about Greg’s story], there are always people that come up to us afterwards and say, I had a similar experience, but I was lucky,’” he says.
Yet “pretty consistently the attitude in the system towards our efforts for change has been defensiveness and resistance,” he says, adding that they have “huge respect” for the front-line health care workers. When the HQCA follow up report found minimal progress, he says, “we weren’t surprised.”
“I’m a farmer, and that creates a mindset that there’s a problem, let’s figure out a solution — if you don’t do that as a farmer, you don’t succeed,” he says. “That’s why it’s particularly frustrating looking at a system that is relied upon for people’s lives, where the attitude is ‘it’s not my problem.’”